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Washington Babies
Back in the hospital
Warning parents who lost a child, may not want to read.
Not sure if I've gotten on my "be your child's medical advocate" soap box on here, but damn, do it. Don't just blindly listen to the doctors. Doctors are awesome, and want to help, but trust your instincts.... you know your child best. I can tell 4 different stories now from the past month of mis-diagnoses and "it'll be fine" responses that turned out to be wrong... doctors are human and failable just like the rest of us. So listen, respect, and if something doesn't feel right, keep asking questions.
We were assigned to neurology after Isaac's last ER visit, and they did a follow up EEG. The awesome neurology docs here at SCH called me the same day with results... all was normal. But that was it, go on about your day. Since episode #2 didn't seem to jive with the original reflux diagnosis, I (respectfully) pushed back with next steps, and got the suggestion of my pediatrician, pushed some more and got the suggestion to try pulmonology. I called Monday and they ended up with a cancelation yesterday and got me in.
Thankfully they were running almost an hour late. I say thankfully, because after a good appointment, as I was getting packed up to leave, I glanced over at Isaac in his stroller. He looked dead. I can't even describe to you how horrifying he looked, eyes open, lifeless, mouth slack, horrible purple-blue-grey color, not even a twitch of movement. I scooped him and yelled for the doctor. A nurse came running, and he slowly started to breathe again over the course of 30 seconds. So thankfully this happened here vs. 30 minutes later on the highway.
So the good news is that they are taking us seriously, and we're re-admitted for a few days. The bad news is that they are running out of theories to test. Thanks to everyone for your T&Ps.
I'm going to make an AWESOME big brother.
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Re: Back in the hospital
How scary, I am glad you were still at the dr office. I hope the drs can figure out what is going on soon.
Hugs to you and your family.
Jen - Mom to Jillian (10/2008) and Hayden (4/2010)
My Blog
I'm so sorry hun -- and I'm so thankful you were already there! Fingers crossed that you get a quick answer!
Bio & Blog | The Chic Bambino | Bumps & Babies Fair
This brought me to tears - I can't imagine how scary it must be to see your baby like that. I'm so glad that you are pushing for answers. I'll continue to keep Isaac in my T&Ps.
Thanks all. It means a lot to me to be able to come on here and get it off my chest. My phone is currently in service as a white noise maker, and I can't really leave his bedside, so I haven't been able to talk to my family. I guess I could call them when he's awake, but would you want to miss that? So you guys are my real time communication channel.
I appreciate the support... we do desperately need it. He's fine 99% of the time, but what happens if that 1% happens when I'm driving, or he's sleeping, or we're on a 10 hour plane ride to Europe to see his great-grandparents? I stop every few minutes on a walk to check his breathing, reach back to feel his chest while driving... the anxiety is killing me. What happens if he doesn't come out of it on his own, and I either don't see it, or we are not <5 minutes away from the nearest emergency response team?
As you may imagine, we are seriously rethinking our trip to Europe (11/11 - 12/4). Non-refundable tickets, so we may need to just burn a couple grand. The harder part is that if we don't meet his great-grandparents soon, we may never have the opportunity since they are in their 90s.
I'm going to make an AWESOME big brother.
Baby website / My blog
That sounds so terrifying!!! I'm glad you were already at the hospital and hopefully that experience will give you some more leverage to fight for them to figure out what is going on. How truly awful to have to go through that, I can't imagine.
I hope you get some answers very, very soon!
Holy sh!t, that's so scary. I hope they can figure out what's going on once and for all. I am so sorry you have to go through this.
You are a great mama with terrific instincts! I can't tell you this enough. Thank goodness Isaac has YOU! He is such a lucky little boy.
I hope they figure out this mystery soon. I hope you are able to rest soon. and I will continue to keep you in my T&Ps.
The only Easter Bunny I can get behind.
Maxwell Joseph 4/09 Lucy Violet 10/12
M/C 9/21/09 | M/C 12/24/09 | BFP 1/23/10
Madeline Rey DOB 9/30/10
TTC # 2 Jan 2013
BFP 3/12/13 | EDD 11/18/13
It's a GIRL! Lydia Marie!